This appendix provides information on the sources of data used in this publication, and the limitations of each source.

The following summaries describe the surveys, their sampling formats, the size of the respondent bases, and definitions of terms used in the surveys, including how disability is measured. Information is also presented on databases that served as data sources for this publication. More details can be found in the original publications.

The Census of State and Federal Adult Correctional Facilities has been conducted six times since 1974. The data in this Chartbook are based on the 2000 Census of State and Federal Adult Correctional Facilities. The census collected data from 84 Federal facilities, 1,295 state facilities, 22 facilities under both state and local authority, 3 facilities operated by the District of Columbia, and 264 privately operated institutions. The Bureau of Justice data reported in the Chartbook is based on information from the 1,558 public and private adult correctional facilities whose inmates were state prisoners (Locally operated jails and Federal confinement facilities were not included in the reporting.) In the report on state prisons, 1,121 prisons were classified as confinement facilities and 463 facilities were community-based. The census classified facilities as community-based if at least 50% of inmates were regularly permitted to leave unaccompanied. Community-based facilities included halfway houses, prerelease, work release and study release centers.

The Census of Correctional Facilities asked questions about the kinds of mental health services provided, and the percentage of inmates receiving those services. The census reports on these variables by gender, facility operation (private vs. public), authority to house (male vs. female), security level, facility size, and other characteristics of the facilities, as well as by state.

The Center for Mental Health Services (CMHS) Client-Patient Sample Survey (CPSS) was conducted in 1997. The survey sampled more than 8,000 youth in about 1,600 mental health care facilities, including clinics, hospitals, community centers and social service agencies. It is the first survey with a sample size large enough to allow researchers to calculate national estimates of children and youth who receive mental health services. The survey collected data on age, gender, race-ethnicity, living arrangement, family income, primary payment source, diagnoses and presenting problems.

The Epidemiologic Catchment Area Survey (ECA) was a multi-site, epidemiological and health services research study that assessed the prevalence and incidence of mental disorders, as well as use of mental health services. There were five sites for the study, and five universities that carried out the research: New Haven, CT (Yale); Baltimore, MD (Johns Hopkins); St. Louis, MO (Washington University); Durham, NC (Duke); and Los Angeles, CA (UCLA).

Survey design and sampling — Population sizes in the five sites ranged from 270,000 to 420,000 with different mixes of urban, rural and suburban locations as well as ethnic and age compositions. In each area, a probability sample of households was selected, and one adult, age 18 or over, was interviewed about the people in the household. The following groups were over-sampled: the elderly in New Haven and Durham, African-Americans in St. Louis, and Hispanic people in Los Angeles.

Respondents — A total of 18,571 people were interviewed, with a range of 3,004 to 5,034 completed interviews at each site.

Definitions — The ECA diagnosed mental disorders according to the diagnostic criteria outlined in the Diagnostic and Statistical Manual of Mental Disorders—Third Edition (DSM-III) of the American Psychological Association.

The Inventory of Local Jail Mental Health Services (1993) was conducted by the Center for Mental Health Services in 1993. The survey was developed in conjunction with the American Jail Association, the National Sheriffs’ Association, the American Correctional Association, the National Institute of Corrections, the Bureau of Justice Statistics (BJS) at the U.S. Department of Justice and other experts. In 1993, completed surveys were obtained from 3,076 of 3,191 identified facilities (96% response rate). Information was collected on types of mental health services, who provided the services, whether outside agencies also provided services, the volume of services and funding for the services. Data on mental health services were reported for the nation and by average daily population (ADP) of the jails.

The Inventory of Mental Health Services in Juvenile Justice Facilities (1998) was the first national survey on the availability of mental health services in the juvenile justice system. The survey was conducted by the Center for Mental Health Services, collecting data from 2,798 facilities in 1998. Of these, 1,022 were group homes and halfway houses, 673 were residential treatment facilities, 501 were detention centers, 269 were shelters, 162 were training schools, 139 were ranches, camps or farms, and 32 were diagnostic centers. The survey asked questions about the kinds of mental health services available to juveniles in the facilities, the professional disciplines of people providing services, the sources of funding and outside services provided. Data were reported in aggregate and by type of facility and type of service.

Methods for the Epidemiology of Child and Adolescent Mental Disorders (MECA). This survey was conducted in 1991-1992 through a cooperative agreement between NIMH and four Universities—Columbia, Emory, University of Puerto Rico, and Yale. The MECA was conducted in survey areas geographically convenient to the Universities, chosen for diversity in socioeconomic characteristics, culture, and ethnicity. The study was designed to develop and test instruments and methods suitable for future large-scale epidemiologic studies of mental disorders among children and adolescents. Differences in sampling methods between sites prevented weighting of pooled data, and proportions resulting from these un-weighted data are not representative of a larger population.

The target population was youth 9-17 years residing in housing units in the geographical area; institutionalized youth were not included. Both youth and adults respondents (parents) were required to speak English or Spanish as their primary language. The combined sample size for the four field sites was 1,285 youth-parent pairs.

National Comorbidity Survey (NCS): Mandated by Congress and conducted in 1990-92, the NCS was the first survey to administer a structured psychiatric interview to a nationally representative sample. The survey was designed to study the prevalence and correlates of psychiatric disorders and the use of services by people with those disorders. The study also focused on the comorbidity of substance use disorders and non-substance psychiatric disorders.

Survey design, sampling , and respondents — A household survey of over 8,000 respondents, ages 15 to 54 years, was conducted in 48 states, based on a stratified, multistage probability sample. The study also included other supplemental samples.

Definitions — Psychiatric diagnoses were assigned based on a structured psychiatric interview (a modified version of the Composite International Diagnostic Interview, which provides diagnoses according to the Diagnostic and Statistical Manual of Mental Disorders—Third Edition, Revised, DSM-III-R, of the American Psychological Association). The study did not measure disability, but rather the presence or absence of psychiatric disorders.

The National Comorbidity Survey Replication (NCS-R) is a national survey of mental disorders, conducted in 2001-2002 as a follow-up to the National Comorbidity Survey. At the time of publication of this Chartbook, only data on major depressive disorder had been released from the NCS-R.

Survey design, sampling, and respondents — A nationally representative face-to-face household survey of 9,090 respondents, 18 years and older, was conducted in 48 states, based on a stratified, multistage probability sample. The response rate was 73%. All respondents received a Part 1 diagnostic interview and 5,554 respondents received a Part 2 interview. The Part 1 sample was poststratified to match the 2000 Census population. Data on major depressive disorder were collected between February 2001 and December 2002.

Definitions — Major depressive disorder was assessed using the Composite International Diagnostic Interview (CIDI) and the Structured Clinical Interview for DSM-IV. Role impairment was a measure of the extent to which depression interfered with functioning in work, household, relationship, and social roles, and was assessed by scores on the Sheehan Disability Scale (SDS) and the World Health Organization disability assessment scale (WHO-DAS).

The National Health Interview Survey (NHIS) is a principal source of information on the health of the civilian non-institutionalized population of the United States. It has been conducted annually by the National Center for Health Statistics (NCHS) since 1957. Each year, the survey consists of a basic set of questions on health, socioeconomic and demographic items as well as one or more special questionnaires to obtain more detailed information on major current health issues. A special questionnaire on mental health was conducted in 1989 and a special questionnaire on disability, the NHIS-D, was conducted in 1994-95. (See below for a description of these surveys.) The NHIS also provides information about activity limitations and chronic conditions.

Survey design and sampling — The NHIS is conducted according to a multistage probability design, permitting continuous sampling of the civilian non-institutionalized population living in the United States. Each weekly sample is representative of the target population and is additive with other weekly samples. Sampling is done throughout the year, preventing seasonal bias. Information is obtained about health and other characteristics of each member of the household. The usual sample size is approximately 48,000 households or about 122,000 individuals each year.

Respondents — The interviewed sample for 1994 was 116,179 individuals (45,705 households) and for 1995 was 102,467 individuals (39,239 households). Response rates were 94.1% in 1994, and 93.8% in 1995.

National Health Interview Survey on Disability (NHIS-D): In 1994-95, a special questionnaire on disability, the NHIS-D, was included as a topical module on the National Health Interview Survey. The survey was conducted in two phases. Phase I of the NHIS-D was designed to identify a wide range of children and adults with chronic conditions, impairments, disabilities and elevated service needs. Information was collected on 107,469 individuals, of whom 30,032 were children. The response rate for the NHIS-D, Phase I, was 87%. Phase II of the NHIS-D was designed as a follow-up questionnaire with individuals who were identified in Phase I. Data from Phase II were collected 1 year after each Phase I survey. Thus, the data collection period for the NHIS-D spanned from 1994-1996. Combined, data were collected on 205,560 persons, 41,100 of the sample were school-age children. See functional activity and functional disability in the Glossary for definitions of those terms as used in the NHIS-D.

National Health Interview Survey, Mental Health Supplement (NHIS-MH): In 1989, a special supplement on mental health was included as part of the NHIS. The purposes of the supplement were to update previous estimates of the prevalence of serious mental illness and to examine the use of mental health services and disability program participation of the population with serious mental illness. Information was collected on 113,231 people, a response rate of 96.8% of those who were interviewed on the basic NHIS questionnaire that year or 91.9% of the total NHIS sample for the year. Given that mental illness often carries great stigma and that the survey was not designed to diagnose mental disorders, the data from this survey are likely to underestimate the actual prevalence of mental disorders.

The National Hospital Discharge Survey (NHDS) is a continuing nationwide survey of hospitals, focusing on short-stays rather than long-term care. On the basis of patient records, the survey estimates the causes of illness and injury nationwide.

Survey design and sampling — Hospitals are selected to have patient records abstracted and analyzed. The survey uses a stratified sampling methodology, based on hospital size, number of discharges, primary diagnoses, patient age and gender group, and other factors. Statistical adjustments are made for non-responding hospitals and missing abstracts.

Definitions — Among other purposes, the survey provides national estimates on causes of short-term disabilities that result from illness and injury.

National Nursing Home Survey (NNHS): The National Center for Health Statistics has conducted six national nursing home surveys, beginning in 1973. The estimates in this publication of the number of elderly people in nursing homes were based on the results of the most recent (1999) NNHS.

Sampling — The 1999 survey sampled nursing homes with 3 or more beds that routinely provided nursing care services. The sample of 1,423 homes was selected from a sampling frame of 18,000 nursing homes contained in the National Health Provider Inventory.

Sampling — The survey used a stratified two-stage probability design. The first stage was a probability sample of nursing homes in the sampling frame. The first strata were bed size and certification status. Then homes were selected using systematic sampling with probability proportional to bed size. The second stage sampled up to six current residents an six discharges from each facility during a randomly selected designated month (between October 1, 1998 and September 30, 1999).

Data were collected in face-to-face interviews with nursing home staff via three questionnaires: The Facility Questionnaire, the Current Resident Questionnaire, and the Discharged Resident Questionnaire.

National Survey of Homeless Assistance Providers and Clients was done in 1996 to provide information about the providers of homeless assistance and the characteristics of homeless persons who use services based on a statistical sample of 76 metropolitan and non-metropolitan areas. The Census Bureau collected data for the survey between October 1995 and November 1996. Seventy six (76) geographic areas were included in the national sample. They were comprised of the 28 largest metropolitan areas, 24 randomly selected medium and small metropolitan areas, and another 24 randomly selected non-metropolitan areas (small cities and rural areas).

The national survey involved two phases. The first phase—the "provider survey"—was conducted from October 1995 through October 1996. It involved telephone interviews and a mail survey of assistance providers in the 76 geographic areas. Included were providers administering 16 categories of programs, including those that are specifically targeted to homeless people (e.g., shelters, soup kitchens, and outreach programs), as well as certain "mainstream" assistance programs which offer programs targeted to homeless persons.

The second phase—the "client survey"—was conducted over a four-week period in late October and early November 1996. It included interviews with a sample of approximately 4,000 persons who were using services in emergency shelters, soup kitchens, outreach programs, and other locations where assistance is provided.

Rehabilitation Services Administration Program Data are collected by the Rehabilitation Services Administration (RSA) from all the states and compiled annually. Information used in this Chartbook was made available by RSA from unpublished data analyses.

The Survey of Income and Program Participation (SIPP) is a multi-panel, longitudinal survey conducted by the U.S. Census Bureau. The SIPP covers the civilian, non-institutionalized population of residents living in the United States, and collects data on source and amount of income, labor force information, program participation and eligibility data, and general demographic characteristics. The SIPP also includes disability supplements that ask questions to determine individuals’ disability status. Historical background and more detailed information on the SIPP can be found on the Internet at http://www.sipp.census.gov/sipp.

Survey design and sampling — The data in this publication are based on a number of overlapping waves and panels of the SIPP. The survey design is a continuous series of national panels in which the same households are interviewed every four months for periods ranging from 2 1/2 to 4 years. A cycle of four interviews covering the entire sample and using the same questionnaire is called a wave. Interviews are conducted by personal visit and by follow-up telephone calls. All household members who are 15 years and older are interviewed, if possible, and proxy response is permitted when individuals are not available for interviewing.

Respondents — The data in this report come from the 1997 Americans with Disabilities study. It is based on data collected in wave 5 of the 1996 panel when approximately 32,000 households were interviewed. A rough estimate of the number of individuals interviewed per file would be 85,000 to 90,000, based on an estimated average of 2.5 individuals per household.

Definitions — The questions that have been asked in the disability supplements of the SIPP were designed to be consistent with the definition of disability set forth in the Americans with Disabilities Act (ADA). People 15 years of age and older were considered to have a disability if they met any of the following criteria:

used a wheelchair, a cane, crutches or a walker;

had difficulty performing one or more functional activities (seeing, hearing, speaking, lifting/carrying, using stairs, walking, or grasping small objects;

had difficulty with one or more activities of daily living (ADLs), which include getting around inside the home, getting in and out of bed or a chair, bathing, dressing, eating or toileting;

had difficulty with one or more instrumental activities of daily living (IADLs), which include going outside the home, keeping track of money and bills, preparing meals, doing light housework, taking prescription medicines in the right amount at the right time, or using the telephone;

had one or more specified conditions (a learning disability, mental retardation or another developmental disability , Alzheimer’s disease, or some other type of mental or emotional condition);

had any other mental or emotional condition that seriously interfered with everyday activities (frequently depressed or anxious, trouble getting along with others, trouble concentrating, or trouble coping with day-to-day stress);

had a condition that limited the ability to work around the house;

if age 16-67, had a condition that made it difficult to work at a job or business;

received federal benefits based on an inability to work.

Individuals were considered to have a severe disability if they met criteria #1, 6, or 9; or had Alzheimer’s disease, or mental retardation or another developmental disability; or were unable to perform one or more of the activities in criteria #2, 3, 4, 7, or 8.

Social Security Administration Program Data is collected by the Social Security Administration (SSA) and published each year in the Annual Statistical Supplement to the Social Security Bulletin. A substantial number of the tables in this publication are based on sampling one-percent or ten-percent of the files from the administrative records. Due to sampling error, some of these estimates may be different from the results that would have been obtained if all the records had been used. Detailed information on sampling variability may be obtained in the Annual Supplement. [See also the Glossary for definitions of the following terms that are used in the Social Security Administration Program Data: Disabled worker; Old Age, Survivors and Disability Insurance (OASDI); Social Security benefits; Social Security Disability Insurance (SSDI); and Supplemental Security Income (SSI).]

U.S. Department of Education, Office of Special Education, Data Analysis System: This data system is the source of program data on special education in the United States. Data is collected from all the states on children and youth, ages 0 to 21 years, who are served under IDEA, the Individuals with Disabilities Education Act. Analyses of these program data are published each year in an annual report to Congress; the Twenty-third Annual Report (U.S. Department of Education, Office of Special Education and Rehabilitation, 2001) is the most recent such report.

The Youth Risk Behavior Survey, conducted every two years by the Centers for Disease Control, is a nationally representative survey of public and private high school students, grades 9-12. The survey monitors priority health risk behaviors that contribute to the leading causes of death, disability and social problems among youth in the United States. A three-stage sampling frame, including an oversampling of black and Hispanic students, yielded 13,601 usable questionnaires from 150 schools in 2001. The school response rate was 75% and the student response rate was 83%, resulting in an overall response rate of 63%. Student participation was anonymous and voluntary. Students completed the self-administered questionnaire and recorded their responses directly onto a computer-scannable booklet or answer sheet. The data was weighted and analyzed using SUDAAN.

Jans, L., Stoddard, S. & Kraus, L. (2004). Chartbook on Mental Health and Disability in the United States. An InfoUse Report. Washington, D.C.: U.S. Department of Education, National Institute on Disability and Rehabilitation Research.